My journey with SMA Type 1

Main menu

Post navigation

Man, does time fly…

I can’t believe it has been a little over a week since the surgery. It truly does not feel that long. Logan has been doing great. The first night home was rough, but since then it has been pretty good. The only odd hiccup is Logan’s schedule is off. Originally he would go to bed around 7:30/8pm and stay there around 12 hours. During that time though he would wake almost every 2 hours if not more often. Since the surgery, he goes to bed no earlier than 9pm and wakes at 6am. The good thing about this is he is only waking twice at night to eat. The bad thing, there is no alone time before bed. I literally crash after he goes down.

We have been working on the continuous feeding at night. They want us to work up to 40ml but I feel that is too much for his tummy at night. I upped it to 20ml the other night but he seemed more fussy so I lowered it back to15ml. He is eating more during the day so he has worked himself back up to 30oz!!!

He has been extremely chatty after the surgery. Normally he would have his selective moments of chatting, like early morning when Mickey Mouse is on. But lately, he has been chatty all through out the day. I’m amazed at how vocal he has become. I love it!!! He has such a sweet voice. I had a friend ask how devastated I would be if I never heard him say “momma” or “I love you”. I told her I didn’t know. I’m not there yet. I am a huge preplanner and forward thinker, but I can’t grasp that notion that I might never hear my baby boy truly speak to me. I suppose a piece of me holds onto hope that he will. A piece of me still questions if this is a dream..sigh. I freaking hate SMA.

Logan has had so much drool come out of him lately that I’m not sure how his little mouth makes it so fast! Teething is definitely a possibility. One day it looks like he has a swollen spot and the next everything looks normal. He has constantly been chewing on his finger though. Whatever this is, I hope he moves through it soon. It has been frustrating him.

I have been thinking about our drive home from STL lately. On the way home, I felt an emptiness. I felt something similar on the way home after the first appointment with all the specialists. However this time it was stronger. It was almost like a dark cloud was just hovering over me. It has since left, but I have been pondering what happened. Is it because there is still no treatment or cure? Possibly… I just can’t pinpoint it right now.

I have already started thinking about Logan’s 8 month birthday in a little under two weeks. I can’t believe it is almost time to celebrate again. I know a lot can happen between now and then, but I have hope. He is a strong boy 🙂

2 thoughts on “Man, does time fly…”

You move me to tears. You’re such an amazing mom and Logan is so lucky to have a family filled with love! You know him so much better than so many others know their children. He speaks to you through his eyes, jiggles, and coos. Even if you never hear his voice say the words (though I pray you do), you have heard your baby’s true voice so much clearer than many other moms out there. He loves you! You’re his mama!